Advocacy and communication were key to receiving quality care in a crisis

The year did not ease in gently for our family.

January came in loud and demanding, reminding families like mine that a new year does not promise a clean slate. Instead, it brings more charts, more hospital rooms, and yet another recalibration of what normal looks like.

The day after my 9-year-old son, Juju, received a gene therapy infusion, something shifted. His color was off. His movements changed. His breathing and heart rate broke from their usual rhythm. These weren’t subtle changes — they interrupted the day and demanded immediate attention.

There is a moment many parents of medically complex children recognize: the instant when something feels wrong, even if you can’t yet explain why. A child may be uncomfortable, tired, or just under the weather. Then comes the moment when instinct takes over, and waiting is no longer an option.

That instinct sent us straight to the hospital, where Juju was admitted for monitoring and evaluation. Timing mattered. Listening mattered. Acting mattered.

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Moving forward together

For families living with Batten disease, especially those like us who are affected by CLN2 disease (also known as late infantile Batten disease), vigilance is woven into daily life. Symptoms don’t always announce themselves clearly. Changes can be subtle, layered, or easily misattributed. Advocacy becomes a form of protection — a way to bridge the gap between what we know as parents and what the medical field has yet to fully define.

We continued to raise concerns about muscle enzyme levels and their connection to seizure activity and physical stress. We advocated for careful monitoring, hydration, and thoughtful medication adjustments. As Juju’s swallowing declined, we discussed nutritional support, recognizing that protecting strength and ensuring safe medication delivery couldn’t wait for a crisis.

The medical team listened and responded.

Specialists from neurology, pediatrics, nursing, and other areas came together. Conversations were open. Plans were adjusted collaboratively. Temporary nutritional support was provided while longer-term solutions were arranged. This is what advocacy looks like when it meets partnership. It isn’t confrontational, but rather informed, steady, and centered on the child.

By the fourth day of the hospital stay, Juju stabilized and began returning to his baseline. His labs normalized. His body settled. Seeing that familiar version of him again felt like breathing after holding everything in for days.

Living with Batten disease means understanding that stability does not mean stillness. Some changes continue quietly in the background: Vision loss progresses, abilities shift. Acceptance doesn’t happen all at once; it comes through grief, honesty, and learning to meet your child where they are, in each season.

What is less often discussed is what grows alongside loss. Awareness deepens. Connection sharpens. Small moments carry more weight. A single smile can brighten an entire day. Joy doesn’t disappear; it simply changes shape.

Life with medical complexity can be deeply isolating. The world narrows as appointments multiply and plans fall away. Many families retreat inward, not by choice but by necessity. Survival demands focus, and community can feel out of reach.

For us, though, support showed up — not with answers or expectations, but with presence, consistency, and quiet understanding. It reminded me how much shared strength matters when the days are heavy and outcomes uncertain.

These early days of 2026 have reinforced something essential: Protection often looks like trusting your instincts, progress looks like being heard, and love looks like showing up — no explanation needed.

There will be adjustments ahead, learning curves, and moments that stretch us. But there will also be connection, resilience, and light woven between the hard days.

If you are a parent on a similar path, know this: Your instincts, your voice, and your advocacy matter.

This year is rooted in resilience. We are supported. We are learning. And we are moving forward together.

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.